War! My Battle with Uterine Carcinosarcoma

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After months of being fed intravenously at night, I waved goodbye to the IV pole on my last night of TPN. This was part of my 4-month treatment regime via the Mayo Clinic in Phoenix.

It’s my bet that if I asked you what color ribbon signifies uterine cancer, you, like me, wouldn’t have a clue.

And speaking of not having a clue, most of us know little about a rare form of uterine cancer—uterine carcinosarcoma. Why would we know?  While “uterine cancer is the fourth most common cancer for women in the United States,”  an article from Oncology and Treatment, notes, “Uterine carcinosarcomas are rare tumors that account for less than 5% of all uterine malignancies.”  

In fact, according to Cancer Treatment Centers of America, “Gynecologic cancers do not get the kind of public attention other cancer types do. Compared to breast cancer and its pink takeover during its awareness month in October, gynecologic cancers—cervical, ovarian, uterine (endometrial), vaginal and vulvar— are much lesser known.”  Throw in  carcinosarcoma and it becomes even less known. 

Unfortunate for those diagnosed with this awful cancer, “Uterine carcinosarcoma (UCS) is a rare type of high-grade endometrial cancer (EC) that has been understudied with population-based statistics due to its rarity,” says the Journal of Gynecologic Oncology.  It further notes in 2018,  

“UCS is histologically composed of 2 cell type components: a carcinoma and a sarcoma…UCS is considered a rare tumor. The incidence of UCS in the general population ranges from 5.1 to 6.9 per 1,000,000 person-years.”

The more I read about this cancer that I’m battling, the more I understand the hyper concern and confusion when my first gynecological biopsy was diagnosed. With the good fortune of a gynecologic oncologist practicing out of Santa Maria, Ca., the first line of treatment was surgery in January 2018. Pathology samples traveled to top research universities for exact diagnosis. There remained some conflicting reports, however, as I judged by the various physicians with whom I received treatment and/or consults. 

With all feminine reproductive organs gone, and no signs of the cancer in my lymph nodes, life looked to return to normal post hysterectomy.

But sarcomas are wily. Before 2018 was complete, like rattlesnake eggs, five tumors nested in my empty pelvic region.  One took exponential growth to compound its size from single cell to a 9 centimeter tumor impacting my upper bowel. Another attached to my cervical cup, while another found a bone to attach. Meanwhile, the cells spread to my lungs. 

This was a call to war. And the war ignited into full regalia when my guardian angels pulled the plug on my body on Halloween 2018 while I was in a second-opinion consult with a Mayo Clinic gynecologic oncologist. As pale as white paper, and barely able to breath, and worse — unable to control myself, I hurled and splattered volumes of gastrointestinal debris all over her office.   Rushed to the ER, the final report read: severe anemia, hemorrhage gostrointestinal upper, malignant neoplasm of endocervix (HCC), and dyspnea — NOS (labored breathing). 

Yep, I was really sick. Six days in secondary ICU, followed by another six in the cancer ward for expedited treatment headed by the Mayo Clinic Hospital sarcoma specialist.

This, my friends, is uterine carcinosarcoma — a form of cancer that is aggressive and unpredictable. 

How did it land in my uterus? What researchers do know about the cause has been linked to both use of tamoxifen (which I was treated with post breast cancer in 2004), and pelvic x-rays —something, if memory serves me, was done during a diagnosis for extreme sciatica nerve dysfunction several years back. 

As with many cancers, the prognosis is marginal. It is not curable, but it is treatable. I am, however, blessed with serendipitously landing an oncologist who specializes in sarcomas, along with a gyn/onc as part of the team treating me at the Mayo Clinic in Phoenix. Treatment will continue throughout my life. The goal is to have me continue to kick the can down life’s road. 

How does this make me feel? More importantly, how does this make my family feel? 

I’m okay. I’m rather use to curveballs tossed my way. My family is deeply concerned.

What do I do next?  

While my local and second oncologist diagnosis was grim, the Mayo Clinic team offered me hope.  After all, something is going to get us in the long run. That said, I’m willing to make the changes it takes for me to keeping kicking the can down the road. That includes living closer to the Phoenix Mayo Clinic for continued treatment.

What do I want now?  

I want more research magic from brilliant and imaginative researchers and physicians. But I understand  the reality of funding for research. Sadly, we are at a time when governmental funding for scientific research and health issues is low on the administrative agenda. When so few of us face this kind of cancer, we are at the whim of Lady Luck, passionate supporters,  and a few devoted researchers and physicians. As a society, we’re not well-versed in the wild variations of cancers until it comes knocking at our door.  What might work for one sort of cancer, does nothing for other cancerous forms.  We are also at a dubious point in history where science is mocked and discounted, and that’s just plain pathetic. 

My intention is to share this journey for knowledge about uterine carcinosarcoma. I am NOT seeking pity nor victimhood. For reasons unclear at a spiritual level, I remain rather dumfounded as to why many of my life goals have been taken from me at this point in time. I mean, I cherish the dream of mentoring my grandchildren, of retaining my status as Mom to my daughters, and the beloved status of being a life-partner with Spouse.  There’s so much more I want to learn and write about. But UCS has got in the way and, at present, I’m simply adjusting to the change.

peach-ribbon-lapel-pin-22So bear with me. And if I hand you a peach ribbon, wear it. Explain to others that uterine cancers deserve the awareness and research so essential to women like me. 

 

Where you can donate:

The GRS Project where they seek funding for clinical trials.  

The project’s expert consultant, is the Dr. Michael Birrer, Director of the Comprehensive Cancer Center at the University of Alabama at Birmingham where much of UCS research is being done today.

Mayo Clinic Cancer Research

Memorial Sloan Kettering Cancer Center

14 replies »

  1. Again the unselfish expression in your story is remarkable. You’re teaching us as you speak about this journey and we are able to better understand what Uterine Carcinosarcoma is all about. Thank you so much for your words of wisdom, your honesty and expressions of being positive while fighting the unknown. Much love,
    Teri

  2. I am so very sorry that you are facing this beast. You are such an amazing woman to use this to educate others. I will hold you up in prayer and thanks. May you continue your brave and gallant fight with humor, insight, courage and success.

  3. you have always been a true inspiration in my life,,,,you are a true warrior of God….you are in my prayers daily and i do mean that….nothing but the positive sent you

  4. Dear Charmaine, I think of your daughters who have the blessing of their amazing mother as the most vibrant example of living life on the wings of strength, compassion, humor and intelligence. How could that in itself not be the best gift we give to our children? The fierce passion with which you are fighting your war means that it will be full of life and energy, despite the deep wounds. You are a true Woman Warrior and I love you for that!

  5. A Latin phrase comes to mind: “Dum spiro, spero.” As long as I breathe, I hope. Your spirit of hope encourages me to stay alive. Thank you.

  6. A Latin phrase my Papa taught me comes to mind. (He struggled with multiple myeloma in his early 60s) “Dum spiro, spero.” As long as I breathe, I hope.” Thank you for sharing your strong spirit and your hope. I struggle with depression and cling to hope, one day at a time.

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